Half 2: The Autism Tsunami an Interview with Mark Blaxill
NOTE: This is part 2 of a 5-part series that runs all week. Part 1 is below. At the end of the series we will reorganize to do them in the correct order. Thank you.
By Anne Dachel
A few years ago, the parent of a daughter with severe autism spoke to me about the last IEP meeting he attended in her senior year of high school.
The father asked the staff what was coming next for his child. What adult programs would there be for them?
Her teachers had to admit that they did not know of any specific programs in the area and at the same time assured him that they were sure that something was going to happen.
It came as no surprise to him to learn that no one is prepared for young adults with autism. His daughter was transferred from one program for developmentally disabled adults to another without either of them being appropriate for her behavioral needs. Today the social service pays a relative who babysits her all day.
This is just one tiny example of the future that Mark Blaxill is talking about here.
Mark Blaxill Autism Tsunami Part 2
Question 2: How bad will it get if the autism rate continues to rise as it has in the past?
Mark: It’s getting really bad. We know that. I like to say that the autism rate in the pre-1930 world was practically zero.
Then Leo Kanner discovered it in a handful of children born in the 1930s. He wrote his newspaper in 1943 after seeing a group of children unlike any other group he had ever seen before.
He was the world’s leading expert in child psychiatry. For many years after that, in the US at least, the rates were really low, one in 10,000.
Then they started to tick a little in the 70s and 80s, but in the late 90s they went vertical. We didn’t see the plateau on this curve.
The latest numbers we have are around three percent for American children. In some places there are even higher numbers.
That is, if you were born in 1930 you would be 90 today. … So there are people alive today who were there when there was no autism. The first cases of autism, some of them are still alive. I’ve met a few of them, but they’re vanishingly rare.
So we don’t have a system for older adults with autism whose parents are no longer with us.
We have struggled in special education programs around the world to cope with the onslaught of children.
What we haven’t addressed is the tsunami of autistic adults who are now starting to age out of the school system and pour into an unprepared service infrastructure.
Without parents, there is no infrastructure for autistic adults. You need housing services; they need daily programming services. We will lose their productivity in the population. In some cases, some of the higher functioning adults will be productive work so I don’t mean to belittle that, but to a large extent these will be unemployed people who will weigh on the economy.
These costs have never been seen, they have never been paid, and we are still a long way from being ready to deal with them.
We’re dealing with autistic teenagers in their 20s right now. My daughter is 25 years old. She was born in 1995 when prices were about to go up and there are no services for her. There are no programs for young autistic adults.
I work in an autism center. We have just started. I am the chief financial officer. We just started a program for autistic adults because there isn’t any.
There are programs for the mentally handicapped, but not [for] the unique problems of people with autism. We are not prepared.
Even then, when most young people are young adults, their parents are in their 60s, 70s. You still go. They still take care of their children.
One of my working titles for this paper was Autism Costs A Trillion Dollars When I Die. We are dealing with numbers in the hundreds of billions. You are not small.
We are going to see this tsunami hit. Most of the cost will be with young adults and there will be no safety net as parents are by and large the safety net.
We will be gone. There may be siblings, there may be relatives, but this will be a bleak scenario when we have literally millions of adults to whom we are currently not ready to provide services. They will increase in great numbers.
Mark Blaxill Autism Tsunami Part 1
Question 1: Tell us about your studies, Autism Tsunami: The Impact of Rising Prevalence on the Societal Cost of Autism in the United States. What motivated you and the other authors to look into the future effects of autism?
Mark: My motivation has existed for 20 years. (Inaudible) … and it was pretty obvious for too long that the numbers were exploding.
California and everywhere you looked the numbers went up and that invalidated the orthodox act.
(Inaudible) Mark denied official claims of better diagnosis / replacement.
And we’ve known that for a long time, Anne.
I started writing about it in this area in 2001, 2003. I started writing in the Journal of Autism and Developmental Disorders when they tried to blame diagnostic substitution.
It was obvious that the work they were doing … (inaudible)
I wrote to them. I have a few colleagues to write with. …
The authors who argued that it was a diagnostic substitution had to withdraw their results as they were obviously computationally incorrect.
The rate of autism increased and the rate of intellectual disability did not decrease.
Then I wrote a work that was published in 2004, What’s wrong? The question of time trends in autism.
I argued that interest rates would go up all over the world, particularly in the United States and the United Kingdom.
I know your focus is very much on the United States and the United Kingdom, both of which are up with interest rates.
And then I continued to write about it.
I’ve written a book called The age of autism.
I wrote another book called Refusal, both with Dan Olmsted.
One in 2010 and one in 2017.
You’re kind of yelling at the universe, please pay attention. This is a crisis.
Anne, you do that every day. I do this in projects with longer cycles. We do a lot of the same work.
One thing that happened is Cindy Nevison, who I got to know pretty well and who does a very good job. … about the environmental causes of autism.
You and I met up with a guy named Walter Zahorodny, who’s the CDC man in New Jersey. And New Jersey has reported some of the highest rates of autism.
Walter says the same thing in his own way.
So we started writing an article that was published in 2018. The three of us were co-authors.
I had been looking at the California numbers since 2001, some of the early days. Cindy had started looking at recent numbers. We have compiled our databases.
We published this article that says these courses are exploding and they are real.
By the time we do that in 2018, that’s 20 years after I started looking. The numbers are shockingly higher, and up to your point the increases haven’t slowed down, if at all, they seem to be growing faster. …
Cynthia and I wrote another article called Diagnostic Substitution, which again shows that there is no case that the increases are due to substitutes for intellectual disability.
When they published the California newspaper in 2018, which honestly surprised me, I was surprised because it went against the orthodox narrative.
Good for the diary. They were a pleasure to deal with because they are interested in good evidence and good science, and we tried to write them very rigorously.
Right after that paper in 2018, I wrote the idea to Cindy and a few others – hey, let’s do a paper on the cost of disease because there is literature on the cost of disease.
Most and almost all of them, until recently, almost all of them assumed that autism prevalence rates were constant, which is a spectacular mistake.
First, they tend to go with the latest numbers so that they underestimate the cost of autism in children, and then they assume that at all the rates we see in children, we are also observing the elderly. So they’re going to assign all of that cost and put together a model that says that is the cost of autism in the elderly.
And they’ll add all of that up and they’ll find a number that is too high for the total cost, but underestimated the cost in children and dramatically overestimated – makes fantastic numbers for the cost of the elderly that do not exist.
So this is a mistake, a fundamental flaw in most disease studies, and we have tried to correct that. That was the idea.
Part 2 will follow tomorrow.
